Underwriting guidelines for genetic testing with special reference to the relevant ethical aspects

Abstract:

A revolution in genetic research, known as the Human Genome Project (HGP), is taking place. This project, initiated in 1984, is a twenty-year, six billion-dollar science project designed to map the entire genetic structure (Genome) of the human species (Brockett and Tankersley, 1995). In 1998, the HGP leaders expected to complete the project by 2003 (Lowden, J. A., 1999:33). The Human Genome Project is designed to sequence the human genome (the blue print of genetic information) and to identify the estimated 100000 genesherein. This has added a new dimension to the technology available to
underwriters in the life and health insurance industry for the selection of medical risks. Genetic testing can identify inherited diseases and predict illnesses that might not manifest for decades (Brackenridge & Elder, 1998:89). Genome research has opened up new opportunities for diagnosis and in some cases, early treatment of medical conditions. This new basis of knowledge is referred to as the advent of the molecular age in medicine. Medical journals, the mass media and genetic interest groups are treating human genetics and the opportunities it presents as a high-profile issue, with great attention being paid to the complex and emotive topics of life insurance and genetic testing (Regenauer & Schmidtke, 1998:5). The Insurance Industry can use genetic testing to identify high-risk applicants more accurately and price products accordingly, thereby improving risk assessment and profitability. These potential advantages, however, are
counter-balanced by ethical considerations that are much more difficult to address (Lowden, J. A., 1999:33). Many consumers, ethicists and geneticists fear that insurers will use this data for unfair discriminatory purposes, identifying a genetic underclass of
people who, although clinically well, will be uninsurable. Genetic testing could invade the privacy of applicants and their families. There are concerns about the confidential handling of genetic information as well as the accurate interpretation of genetic tests. The uncertainty about the predictive value of genetic tests, the shortage of trained geneticists and counsellors and the psychological impact of that knowledge of a predictable serious disease might have, have lead to much opposition to the use of genetic information
by third parties. In the United States most Americans receive health insurance through their place of employment. There are fears that genetic testing will be used to discriminate against prospective employees and render many people unemployable and uninsurable (Council for responsible Genetics, 1997: http://www.gene-watch.org/genclisc htuil Consumer groups have lobbied effectively for the prohibition of testing or the use of testing by insurers in the United States and Europe and legislators aim to ban the use of genetic information on a broad basis. Insurers, on the other hand, are assuming that the new laws will cause untold damage to the fiscal stability of their companies (Lowden, J. A., 1999:33). However, it seems inevitable that genetic testing will affect risk classification sooner rather than later and to a greater extent than most believe (Chambers, 1997:
http://www.Inrc.com/epirr/issues/143/143-4.htm).